Trying out the silicone ear plugs don’t hurt ad long as you don’t push it too much in to the ear
I think it was because the VRT lady ramped the exercises so much that it never had the chance to settle and also I have a young family that depends on me. The anxiety is dreadful. My symptom is constant but occasionlay flairs up. It feels as though my head isn’t attached properly and my vision is flickery and I’m just off balance. You will know it is so difficult to escape it. Then the anxiety kicks in and makes it worse. So your migraines have stopped but your left with the unbalance. Similar to me. Have you tried any other meds? How long have you put up with this for?
I am enduring this for 14 months now…How do you think all this started for you ? Any specific injury or assault ? I do my VRT religiously and i dont think it helps. Whatever is happening is not stable if it is stable my brain would have compensated. Another thing is since my migraines have been controlled i am little optimistic that my brain can compensate to the best possible extent.
I usually feel let down after a bad day thinking my life is doomed. I did realize that negative thinking is fleeting and you will feel better the next morning. There are some dizzy curve balls that come to you every once in a while. I have learnt that instead of obsessing over the dizzy event and trying to analyze it to see what could possibly be happening,it is better to let go and say “i felt a little off, it is alright, now i don’t feel as bad let me move on with life”. We have to be our own psychotherapist with an illness like this. We might not be carefree like our old selves but i am sure we will all manage the symptoms and live a normal life !
The only difference i see is you get the leaking/draining noise which i don’t. Nevertheless there is a tinnitus which can go all the way from non-existent to screeching crickets ! BTW my neuro-oto told me the reduced cVEMP in my bad ear can signal SCDS or fistula and she is 100% confident it is not a fistula ! I chuckled thinking of you ! BTW have you ever bothered to try a VEMP, it is pretty simple electrodes to neck and eye with ear phones kind of test. If your insurance covers it you should take it. The neuro-oto ruled out Meniere’s/Secondary hydrops based on the VEMP result.
How is your night time vertigo ? you can still do 5mg Ami at night, it can help you sleep a little better.
That’s true about that significant difference in our symptoms in that respect. But interestingly I had that fluid feeling for 5 months without symptoms so I know that something secondary is causing the actual symptoms. Hence my feeling that the diagnosis of secondary hydrops makes complete sense.
Night time vertigo has stopped for a few days now but I know that might just be a phase (happened before). I’ve had head pressure and a minor fog event though and night time imbalance.
Yes, going back on a bit of Ami is an option but I’m actually doing so well during the day I’m reluctant to do so. I’m free of side effects and I can eek every inch of compensation from the brain this way.
I plan to see my ENT in a few months. I used to go so frequently but now realise this condition changes slowly so no meaningful progress happens in less than a year or so (and within that time you can easily improve then relapse too). I will definitely ask him about VEMP but I know for sure this is no ‘simple migraine’ problem because of my obvious trauma/symptoms timing and the fluid sensation. The other significant point is that it probably wouldn’t change my treatment regime: ie wait and see. At last visit he suggested only s CT scan if I wanted to stop conservative approach (before surgery) Assuming he means to rule out SSCD. If it’s SSCD would I be improving so much conservatively though? It’s still very tempting to have the explorative/PLF surgery but I’ve heard the recovery is 6 months and that’s also a decent time to see conservative improvement too so tough call. I also wonder if the surgery will turn out any better than placebo once they are able to diagnose fistula more concretely and do the statistics. I also wonder if patching is not sufficient and you need to combine it with an endolymph drainage or you always end up with the patch failing due to internal pressure. Or at best be left with secondary hydrops to resolve too.
Perhaps yours is less severe than mine or you’ve healed faster. In any case I’m convinced you will see improvements too. Hang in there. May not take long. My first remission from the chronic symptoms was at 16 months. Then I relapsed and remission started again at 19 months. Have you experienced any significant ‘phases’ in your condition? Any improvements at all?
Also are you doing the diet? It never seemed to help me during the really bad months but I’ve noticed a ‘cherry on top’ effect after fully cutting coffee, chocolate and milk. Head pressure episodes dropped within a day.
Mine arrived out of the blue. I did have migraine with headache as a teenager. Apparently it is common for it to reappear later in life in this form.
The misdiagnosis and then poor treatment when I finally got the diagnosis has set me back mentally. But I’m now seeing Dr S who is one of the best to see in the U.K.
What do you think kicked off yours?
Mine is continuous but does calm to a level that I can deal with it. The attacks are fewer and fewer and put that down to the venoflaxine and diet. I’ve also learned to take it easy a an not stress. My employer is also very understanding. I work a few days from home. Have you missed much work?
So what is your plan? Which meds do you take?
My own aim is to calm the attacks and the anxiety constant searching (similar to how you described in your email) then I expect slowly the base line symptoms of a fuzzy head, tinnitus and blurry vision will slowly calm be less of a constant struggle. This is easier said than done I know but I’m slowly cracking it.
It’s good to talk. Who gave you your diagnosis?
I am new to this group and happy to have found it. I was diagnosed with VM last year after sudden onset of extreme vertigo - and barely able to walk across a room - during what was a very stressful period in my life. Well, more stressful than usual. LOL. I was checked out physically, literally, from head to toe which included a neurology visit and an MRI. The neurologist diagnosed the VM and put me on Zoloft which helped tremendously. But I did not want to spend the rest of my life taking an SSRI daily (my mom was an Rx drug addict) so, with the neurologist ok, I weaned off Zoloft at the beginning of September. And yesterday the dizziness started…and here I am in bed this morning propped up with pillows trying to “steady myself” enough to get something done today. So my question is related to natural treatments for VM instead of relying on daily SSRI. Suggestions anyone???
Hey. I’m relatively new to the group but a long sufferer albeit it took a long while to get a diagnosis.
Have you looked into diet at all?
I got better when i was on Zoloft (GP suspected anxiety) not sure if the med helped or the condition got better with some baseline imbalance still remaining. Two months after weaning off Zoloft as i felt i have reached steady state i was hit with a truck of symptoms. Continuous tingling all over body, blurred vision, eye socket pain, brain fog and occasional vertigo spells and imbalance got worse. It did not go away until week 2 of Nortriptyline. Had to come off nortriptyline cos i could not sleep and now on Amitriptyline which is a god send.
So i do think there are phases to this. Not sure if you have heard of “Vestibular clamp” or “cerebellar clamp”(There is an article on VEDA). It is a neural process where the brain turns off speciifc signals from a ear because they are erraneous. For some people the clamp is released and they are forced to compensate. This is how my VRT therapist explained how i felt better(100%) after the acute stage. I relapsed later once the clamp got released. I think the initial attack hosed something in my ear and don’t think i will be 100% again but looking forward to a new baseline.
Comparing symptoms when switching drugs is hard as your perception of them will change in any case.
But with a fistula there is definitely a process of Hyrdops developing In the inner ear. I had no tinnitus after my ‘accident’ until 6 months later. In that time the endolymph must have built up in the ear. That explains my big relapse (and the ENT said my relapse was secondary hydrops). Until that point the perilymph leak slowed down to the point it didn’t leak during the day. Hence no symptoms. Unfortunately the Hydrops was in any case still worsening unbeknownst to me at the time due to nighttime leaks when reclined. Once the fistula was sufficiently healed the pressure built back up and the perilymph started to compete for space in the inner ear, That’s when pressure rockets and symptoms hit me like a truck. From then on pressure becomes high enough to create random, intermittent, episodic leaks during the day and vestibular symptoms return. The tinnitus is a sign of the Hyrdops. It varies with the extent of the Hydrops (and in menieres it seems like this varies rapidly and considerably at times). Less tinnitus as endolymph shrinks. Then it’s anyones guess if the healing fistula will get strong enough to reverse the Hydrops completely and stem the flow of leaks for good. The improvement of my daytime symptoms suggests this may be possible but stemming the nightime leaks is the real test. I believe there may also be some compensation happening but can’t see one compensating for bigger leak they are too intermittent and significant so if you’ve stopped getting vertigo that is surely a sign the big leaks have stopped. However it only takes a gentle nightime leak to keep everything on a knife edge and ensure this becomes a chronic condition. Ugh.
I get the clamp idea. This adds another layer of complexity to the perception of symptoms. My rocking hallucination was surely resolved by drugs as it disappeared very soon after taking Ami. There is still a chance that related to simultaneous healing though. In my case though the real underlying driver of symptoms was surely the progress of Hydrops versus healing. And I’ve done enough healing for rocking not to return after coming off meds. Unfortunately I’m still leaking like a very small sieve at night. Lol
Sorry way off topic from OP but wanted to respond to that.
Interestingly my tinnitus started 5 months after the initial vestibular event. Did you audiometry see an hearing loss after the Tinnitus onset or before it ?
As you said my rocking stopped with the Ami, tilting became mild. Jelly legs(walking on foam) varies on a day to day basis. I sometimes get an ugly i am going to topple over backwards in my chair kind of sensation which causes the most anxiety.
Now I get ear pressure and fullness occasionally in both ears and stays for hours at a stretch and disappears. Since i get it in both ears i assume this is a silent migraine , Ami covers up visual symptoms nicely but others break through. I also get a mild light headed feeling, this used to worse before the Ami.
The brick under the bed is a brilliant idea, even if you roll off the pillows the bed tilt is good to keep the pressure off the window. As for surgery i have read that the perception of a leak and fistula varies from surgeon to surgeon even on opening up the inner ear as it is microscopic. Also it far more dangerous to mess with something when medicine truly don’t understand everything about it.
Before? Sadly not. But I had no perceptible impairment prior. My impairment now is noticeable (but the tinnitus even more so!) It’s clear to me that tinnitus is due to narrowing of channel due to the hydrops causing the hairs to become trapped by the ceiling. At that point they start to ring. A hiss suggests a spectrum being involved.
I’ve read this type of tinnitus can be reversible but you need to address the hydrops. Lift the ceiling and tinnitus goes? (Well anatomically it’s dropping the floor) Some people get wild fluctuations in tinnitus. Mine is persistent but usually changes slowly. I sometimes get escalations after some types of meal. That’s huge evidence for Hydrops being involved.
Yes and ENT surgeons are often too bullish and keen. I suspect the outcome of patching is MUCH more uncertain once Hydrops has really taken hold. Also have you seen the post op restrictions? I wonder if their effects alone are significant. It’s worth incorporating those into your life without surgery to see if that can help on its own?
What we really need is a way of reducing the endolymph medically and then allowing the healing to occur automatically.
THIS for me is the reason we have the 6Cs diet. It’s to reduce Potassium intake and therefore limit Endolymph production/pressure. I believe it helps!
I was sceptical for a long time but having dropped the meds has meant I can feel much more subtle changes in my symptoms. I’ve noticed an increase in symptoms after eating a chocolate brownie. Full of dairy, nuts and chocolate they are surely a no no. All those have high levels of potassium. Coffee not only contains caffeine, it is high in potassium. It all fits!!!
Eat a meal high in Sodium AND Potassium and you are asking for vertigo!
But restricting salt may be a bad idea as you want the perilymph to expand and dropping salt probably encourages the hydrops to worsen. Just don’t go crazy in one meal.
Advice given to menieres patients to reduce sodium makes sense but you need a perilymph pressure to combat the hydrops. It’s a tricky balance!! (In any case the etioligy of menieres whilst involving some of the same mechanisms is probably very different and for a reason unknown)
PS Here is that paper that shows massive improvements of hearing and reductions in tinnitus can occur if you reduce endolymph volume in patients with hydrops. Not advocating anyone gets surgery (and definitely NOT destructive surgery) but it demonstrates the relationship between hydrops, hearing loss and tinnitus nicely. It shows how surprisingly reversible it is which counters the doom mongers. http://www.tinnitusjournal.com/articles/tinnitus-report-of-ten-cases-of-perilymphaticfistula-andor-endolymphatic-hydropsimproved-by-surgery.pdf
This is an interesting comment. Amitriptyline cannot regulate how much potassium/sodium is absorbed by the body and still it elevated the threshold high enough that a chocolate brownie did not cause dizziness. This is the interesting piece that migraine meds somehow mess with the ear fluid pressure and that is the reason some people feel all the way to 100% just finding the right meds.
Correct me here, but the migraine diet does not encompass reducing salt AFAIK. It is an hydrops/ Meniere’s thingy to cut back on salt. Could it be the that the perilymph(sodium) exerts pressure on the endolymph and not the other way around in Meniere’s ?
Daily recommended potassium intake for adults is quite large 4,700 mg/day and almost everything has potassium in it. I doubt cutting back on potassium as a way of diet is even doable. I had read the diuretics as a side-effect deplete the body of potassium.
If Ami kept your ear pressure in check at night. Don’t you think staying longer on Ami might expedite your recovery ? Just thinking out loud.
I’m researching and exploring diet changes and natural alternatives to depressants
Well I don’t think it’s doing that at all, sadly. Would be nice though. It’s only my neurological symptoms including the perception of things that’s changing with Ami. I don’t think the tricyclic meds are changing the pressure or fluid balance. In fact coming off the meds has not changed my tinnitus nor feelings of fluid in the ear whatsoever as far as I can tell. I think the only thing that has allowed me to come off the meds is a sufficient drop in pressure and a sufficiently healed fistula that no longer leaks significantly during the day so I no longer need to have a medication that helps with dampening the motion senses. Maybe I’ve also compensated somewhat and Ami helped reduce the brain going into migraine state enough that it assisted with that process (assuming a migraine is effectively a result of a failed compensation process). Dizziness is a sign of lack of compensation. Somehow things have fundamentally got better for me at root cause level or I’ve compensated to a large extent. There is also some other issue going on in the ear due to the imbalance independent of a leak. Perhaps additional flows of fluid that don’t occur in a balanced ear that cause more stress on the brain. Ami was helping to mask those too. I still can’t turn my head in bed with complete comfort some nights. It is also a medication that reduces nausea.
Propanalol and diamox might change ear pressure by lowering CSF but that would only affect the Perilymph side presumably but that might be enough to reduce vertigo but intuitively that would not necessarily lead to a reduction in Hydrops directly but the pressure drop might help a fistula heal. Hence my interest in Diamox.